A new report confirms what many of us familiar with the industry already knew: pharmaceutical companies give HUNDREDS of MILLIONS of dollars to so-called “patient” advocacy groups and associations, including Susan G Komen Foundation and The American Diabetes Association.

Sometimes, these groups then lobby state and national lawmakers to favor pharmaceutical-oriented regulations and laws. Also, these groups are widely interviewed in the media, which some say makes these groups additional spokespeople for pharmaceutical drugs that don’t always have real benefits.

“Patients newly diagnosed with a disease often turn to patient advocacy groups for advice on treatment options, but the money flow to such groups may distort patients’ knowledge and public debate over treatments, unfairly favoring pharmaceutical drugs over alternative options,” said Dr. Adriane Fugh-Berman, the director of PharmedOut, a Georgetown University Medical Center program that is critical of some pharmaceutical marketing practices.

Six drugmakers contributed one MILLION dollars or more to individual groups that represent patients who are potential customers for their drugs.

The database identifies over 1,200 patient groups. Of those, 594 — ALMOST HALF— accepted money from pharmaceutical companies. The report shows 15 patient groups — with annual revenues as large as $3.6 million — relied on the pharmaceutical companies for at least 20 percent of their revenue, and some relied on them for more than half of their revenue. And the researchers admit that the database explores only a small slice of the pharmaceutical industry’s giving overall.

USING CHARITY AS MARKETING

Some of the patient groups with ties to the pharmaceutical industry echo industry talking points in media campaigns and letters to federal agencies, and do little to support those suffering from the disorder. And often, patients receive financial support from pharmaceutical companies to represent their interests at state capitals and in Washington D.C. — with the aim of more taxpayer dollars going towards research that pharmaceutical companies profit off of. Some associations and advocacy groups even encourage pharmaceutical use by sending updates on the newest drugs and industry products.

PHARMA FUNNELS TWICE AS MUCH $$ TO ADVOCACY GROUPS THAN IT SPENDS LOBBYING CONGRESS

The database shows that donations to patient advocacy groups tallied for 2015 (most recent available) was DOUBLE the total amount the companies spent on federal lobbying. The 14 companies that contributed $116 million to patient advocacy groups reported only about $63 million in lobbying activities that same year.

Though the primary missions of these patient groups should be to increase attention on the needs of patients with a particular disease — such as arthritis, heart disease or various cancers — some groups effectively supplement the work lobbyists perform, providing patients to testify on Capitol Hill and organizing letter-writing and social media campaigns that are beneficial to pharmaceutical companies.

TROUBLING TIES

The financial ties are troubling if they cause even one patient group to act in a way that’s “not fully representing the interest of its constituents,” said Matthew McCoy, a medical ethics professor at the University of Pennsylvania, who co-authored a 2017 study about patient advocacy groups’ influence and transparency.

“When so many patient organizations are being influenced in this way, it can shift our whole approach to health policy, taking away from the interests of patients and towards the interests of industry,” McCoy said.

“That’s not just a problem for the patients and caregivers that particular patient organizations serve, that’s a problem for everyone.”

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PHARMA FUNDING IS A NEWER TACTICIn the ’80s and early ’90s, patient lobbying was generally limited and self-funded with only one or two affluent patients from an organization traveling to Washington on a given day, said Diana Zuckerman, president of the nonprofit National Center for Health Research.But the power of patient-lobbyists became apparent after a successful campaign by AIDS patients led to government action and a national push to find drugs to treat the then-terminal disease. Over time, patients’ voices became a potent force, often with industry support. Patient groups have also been successful at campaigning for drug approvals, at times sparking controversy.

Today, patient advocacy groups flush with more industry dollars fly patients in for testimony and training about how to lobby for their drugs.

Some years ago, as the groups increased in number, Zuckerman said, she started getting email invitations from advocacy groups to attend so-called lobbying days explicitly sponsored by the pharmaceutical industry. The hosts often promised training and usually some kind of keynote speaker at a luncheon in Washington — plus a potential scholarship to cover travel. Now, lobbying days involving dozens of patients from a single group are part of the landscape.

The Pre$cription for Power database will grow to include new disclosures. Not all drugmakers are willing to disclose their company giving. Of the 20 companies asked to disclose their donations, ELEVEN declined or did not respond to repeated calls.

THE NEW SPOKESPEOPLE FOR PHARMA

Paul Thacker, a former investigator for Sen. Chuck Grassley (R-Iowa) who helped draft the Physician Payments Sunshine Act in 2010, said there is reason to question the flow of money to patient advocacy groups. The pharmaceutical industry has fostered relationships in every link of the drug supply chain, including payments to researchers, doctors and professional societies.

Since the Physician Payments Sunshine Act began requiring the industry to report its payments to physicians, the industry is more reluctant to co-opt them, so “pharma has to find other megaphones,” PharmedOut’s Fugh-Berman said.

“Sick consumers make for good press,” Fugh-Berman said. “They make for good testimony before Congress. They can be very powerful spokespeople for pharmaceutical companies.”

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